Hello,
Do any of you suffer from lower back and hip pain that does NOT show up on xray?? I have primary sjogrens and am not treating with any meds because when I went to the rheumy I wasn't sick enough. I still think I am not sick enough for meds but I have terrible hip pain, particularly in the morning and after any period of rest. My lower back hurts chronically. The hips have been about two years now and the lower back about six months. Since the xrays and MRI showed basically nothing, I went for chiropractic and massage on a regular basis. Chiropractic felt good but never stuck and the massages hurt like heck and only lasted a few days. Frankly I can't afford to get those massages as often as I think I might need.
My question is this - - is it the sjogrens causing this pain? A physician friend of mine keeps saying I probably have fibro too but I am not going for a diagnosis since there is really nothing to do about that anyway. (I won't take the meds due to weight gain and I already struggle with that a great deal). Any insight would help - -thanks,
Voiceteacher
That kind of pain can be hard to diagnose - there are so many potential causes. My Rheumy said that these diseases (I have Sjogrens secondary to Lupus) can often affect the S-I joint and cause hip/back pain.
I had lower back and often HORRIBLE hip pain for YEARS before diagnosis...thought it was sciatica, etc. One time I was in a horse corral, bent over to pick up a tiny rock and my S-I joint just went so totally out of whack I could not even move - like in the cartoons when the old guy bends over and says "Oh, my back is out!" and stays doubled over while everybody laughs (it's NOT FUNNY in real life!!! ??? ). I dropped to my knees and had to crawl 30 yards to the fence and pull myself up, in horrible pain the whole time.
Anyway - I ended up with an amazing sports-focused physical therapist who found that my S-I joint was very weak and my pelvis was almost 1 1/2" out of alignment. He specializes in golf injuries, which often affect the S-I joint and hips because of the twisting motion used in a golf swing. He used exercises, chiro and massage (I'm not gonna lie - the massage was VERY PAINFUL because it had to break up lots of scar tissue in the muscles along my spine that had been compensating for the misalignment for many years). We things back in alignment over about 12 weeks - 1 or 2 treatments per week. It was not fun - but it worked.
About a year later, things got bad again (not AS bad, thank goodness!) and I went back for another 8-week session.
Then we bought a new mattress - one of those memory-foam ones - and that has made a WORLD of difference in keeping things healthy.
I had hip pain my whole life, practically, and now I have almost none.
Again - there are tons of potential causes for these things, but a good Physical Therapist can help you feel a lot better. I like the sports-injury ones because they tend to be focused on maximizing your activity level instead of just getting you pain-free.
good to hear about the memory foam mattress cuz we bought one yesterday with the adjustable base. hasn't been delivered yet but my body is looking forward to it.
I have dealt with that everyday for the past year or so and I also have Primary Sjorgren's.
Fibromyalsia was added to a few years later to the SJS Dx; happened to see it on a letter the Rheum sent me, and I do not match the trigger points (which I have read is being abandoned as the "it" diagnostic tool).
I had lower back and hip pain way before the SJS Dx. After a long car drive, I would need to ease out and then I would waddle me way into the home, and I was always physically active :(
The pain got to the point that originally I thought the back pain was a kidney problem? And I began having problems walking and managing stairs. This may not happen to you, just something to be aware of and talk to your Dr. about.
I would push to get this addressed: Chronic pain of any kind is a major stress. Experiencing this on a daily basis is going to affect you emotionally, the quality of life, physical and mental fatigue... a cycle and progression we do not need!
And it WILL disturb the quality of your REM sleep, which is when your body works to restore itself... The human body is complex and strives for a state of homeostasis.
Cymbalta and Neurontin help me with the pain. Manages the pain and most importantly restored daily life functionality/ quality.
Hi
I have had hip and back pain for several years. Things have improved a great deal after working with a sports physio. He found that I have some damage to the discs in my lower spine, and a difference in leg lengths. I also have hypermobilie joints.
I've been following his exercise routine for about 6 months now, had an orthotic made for my shoe, and had a steroid injection in my hip for bursitis. This has improved things a lot. I do have wear and tear in my hip, according to xrays, and will need a replacement at some point, but for now, I carry on doing the exercizes every day.
I take Plaquenil, Celebrex, Amitriptyline, Paracetamol and Codeine for pain, and it's managemable just now.
Kathyx
hip hip hooray...NOT!!! yes my hips and low back are my biggest issue- I have RA as well... over the years have had cortisone injections... years ago the first one i had did help- after tht..no go
i see an accupressure guy who help-s
currently seeing chiro who has a new machine that is equivalent of a 4 hr massage..
also hot water bottle with HOT water helps....
i have to be very careful how i sleep- that can amke me worse if im not just right
i too have no idea what causes it- my ra is under great control- no inflamation on the blood test... rhuemy says we can have bursitis in hips with sjs and ra....
soaking in a tub of hot water is good...
wish i had a cure to share- im struggling with this same thing
lori
I have Primary sjs and had very bad lower back pain when I had a desk job with constant stress. I do not have fibromyalgia.
It got to the point where I had to leave the mall after 10min because I couldn't stand the pain in my back. I tried ibuprofen, heat and some stretching on my own but nothing really helped.
My friend got me to see her chiropractor and he found the muscles severely knotted up in my lower back/hip area. I had to go back 1-2 times a week for treatment for 6 wks. It was painful but it worked and I felt a little better after each appt.
Now I make sure I walk more and stretch plus the stress filled job is long gone.
Oh yeah - this is just a small tip, but it made a HUGE difference for me - keep a pillow on either side of you when you sleep, down by your knees - and when you roll onto your side, place it between your knees. I have gotten to where I don't even wake up anymore to do this! It takes some of the stress off your lower back and hip joint.
I am tortured at the moment with lower back pain which spreads into my butt cheek. I can't bear weight on my leg (for example to stand putting trousers on). I wish I had an answer :(
thanks everyone for responding!! I will try the pillow trick tonight assuming my two dogs will allow it :) Perhaps I should put one of them in between my knees LOL.
I would just feel better about it if it at least showed up on xray (: I don't want people thinking I'm making it up - - - IT HURTS!!
Voiceteacher
Hi voiceteacher, the pillow between the knees is one I have used for years and I found it helps. I am no medic, and as you can see from the responses, there are many reasons why you may have the back pain, but I have had pain in my right hip for years also and tried physio's, nothing, exercise, nothing. I recently went to a Podiatrist and found that I was out of alignment and this caused me to weight bear unequally, putting too much strain on certain muscles and joints. This evening I have picked up some orthotics, which I have been told should 'hopefully' eradicate my pain in 3-6mths as it takes a while for my body to fully adjust. I cannot tell you that this is the answer to your problems, but I was very impressed with the MRI scans that showed how much pressure I was putting on muscles and joints unnecessarily. I will post back on this in 6mths I guess. I do hope that you find out the cause of your problems.
Take care,
I had a steroid injection into my hip and lower left back a couple of weeks ago. It didn't work immediately but then the relief was bliss. Hoping something works soon for you, I know the pain is just miserable xx Ailsa
ISN'T IT GRAND to have fellow sufferers that are just a click away! ;D I have had 3 steroid shots in left hip and was told can't have anymore because the bursa will begin to break down?? Have degenerative disc disease but you guys...I may be nuts but think it has been a long term Sjogren's thing. I had back surgery on L5-S1 (laminectomy) when I was just 31! And I thought I was healthy .... chasing around a baby boy, walking dogs, taking aerobics classes and enjoying life. Now my cervical spine is not good, with numbness/tingling and fatigue when I sit at computer or do any kind of focused thing for long...found that out by trying to paint this fall, outside, working on a small building in my dog yard. Yikes-ola! Steroid shots are sooo wonderful but they don't last. Rheumy touched my hip at first exam and I about jumped out of my skin - it was so tender. He said "bursitis."
I'm a little slow these days cognitively ... but if we have Sicca Syndrome, then is it not "drying" out our spines...sure sounds like it by our posts on this topic. P.S. I'm getting a cane, because I live alone and need to grocery shop...and less pressure on left hip is welcomed!
I too have low back and hip bursa pain. Also now my cervical spine is shot. I had an artificial disc placed in my back at L5S1 when I was in my 40s due to the disc drying up and I was bone on bone. Now the disc above it is killing me. Not sure if it's all Sjogrens related or not, but it does seem like a lot of us have spinal issues. As far as the hip bursa, I had two injections which were miracles. The pain is almost gone!
Many moons ago - and I mean many, many years, I had hip pain, but nothing really showed up on the X-rays or CT scans - yet. They though they saw a little on the back CT scans and attributed my pain to that.
Gradually over the years, the hip got worse, and worse. Forward several years and that pain that didn't show up before showed up big time on the MRI and X-rays. I had such severe arthritis in the hip that it was bone on bone and worse. I needed a hip replacement and more.
The back did the same thing progressed to the point the everything is severe. I'm sure the bad hip contributed to the bad back,
So, nothing in the X-rays yet? Don't let it fool you! It doesn't always show up right away. I don't mean to scare you. I'm just trying to point out that sometimes these things just aren't visible yet. Now is the time to get treatment and take care of your hip and back the best you can!
I also think that Sjogrens aggravates my back, hip and all my joints, so yes, it could be that too.
The best thing that helps me for my chronic pain and inflammation is Meloxicam (generic for Mobic), if I forget to take it all my joints are scream at me all day, and I wonder why I am so miserable. I also take Tramadol for more severe pain.
The thing that helps my pain the most is to lay down!
Good luck with getting help for your pain.
I have a super good guy Chiropractor but he doesn't believe in Sjogren's. He says all my problems are caused by a screwed up spinal column. I've been into the natural medicines stuff most of my life, meaning NO meds, and years of homeopathics, more. But with my emotional "sensitivity" to doctors after years of being turned away at the door saying nothing is wrong...well, I'm not sure how I feel about my Chiro. anymore. It just gets old and they become Talking Heads. There are few docs out there who respect that some of us Know Our Bodies. When you have back surgery then see a Chiro years later they're so condescending....Oh you should have never had surgery!
Okay, well, I DID have surgery. So what's your point, will you treat me or not? And please don't lecture me on how toxic Plaquenil & others used to treat Sjogren's are.
If your pain is from Sacroiliac Joint Dysfunction (SI) it can be from either to much motion or not enough motion in the joint.
I found that using a SI belt helps with the extra motion. You can find different types of these belts on the web. I find it really helps when I'm having a flare up of sciatica from my SI.
When the joint is stuck my Chiro helps loosen things up. Physical Therapy to strengthen and stretch the muscles is very helpful and these are things you can do yourself once you learn them.
I also get that and things didn't show up on xray, but I was dx with RA and my rheumy says SJS causes a form of arthritis too. I do take Tramadol and when needed Ibuprofen for the pain and Lyrica for the fibro. I don't know how many of you are in the bed considering your dogs, but I also liked having a body pillow. It is very relaxing wrapping yourself around it and it really helps. I also get a pain that feels like someone is trying to squeeze my pelvic bones together and when that is going on the pillow helps. We haven't figured that one either. Good luck.
"I have terrible hip pain, particularly in the morning and after any period of rest. My lower back hurts chronically. The hips have been about two years now and the lower back about six months. Since the xrays and MRI showed basically nothing, I went for chiropractic and massage on a regular basis. Chiropractic felt good but never stuck and the massages hurt like heck and only lasted a few days. Frankly I can't afford to get those massages as often as I think I might need."
I have had the same issues for years, nothing showed up on xray. I saw a chiropractor for many months (it didn't help) and a massage therapist (often I couldn't get off the table without back pain). I saw a physiatrist who said "keep on doing what you're doing". I was doing yoga for years until I finally figured out that the cobra pose was part of the problem, had lots of arguments with my yoga teacher who didn't agree with me (ummm - I am VERY flexible and can put the palms of my hands on the floor while standing, but when I do your cobra pose, I hurt the next day).
Several months ago, it suddenly got severe over a few days and the only comfortable positions were laying down or standing up. Xray and CTscan later, I was diagnosed with mod-severe DDD, doc referred me to orthopedic surgeon (still waiting). Gave me Traumadol and Celebrex. I talked with several people who had a similar diagnosis and they said physiotherapy did the trick for them, so I asked my doc to refer me.
I'm just past the 5 week mark of physio now (normal recovery 8-12 weeks). PT says everyone has DDD, they see it in kids as young as 12 years old now, it's normal. Some people are symptom-free, others have issues (as I did, pain, severe numbness, funny fingers & toes). PT suggested I go off the meds as the body doesn't do its healing job as well, so I did (just Traumadol when I feel I need it).
I'd suggest, like Sleepy In Seattle did, going for a consultation with a PT. Your body will be compensating in some way for weakness or injury or misalignment, and it's best to have a specialist determine what's up. I have to do 45 minutes of PT exercises 3x a day (eventually 2x a week) and although it's been hard and I've had relapses, I do feel myself getting stronger and having less numbness and shorter recoveries when I do tend to overdo things (right now I am not lifting anything heavy, so when I do that, I feel it!)
Hope that's helpful.
Susan
Quote from: Lesley_x on January 02, 2013, 10:58:30 AM
I am tortured at the moment with lower back pain which spreads into my butt cheek. I can't bear weight on my leg (for example to stand putting trousers on). I wish I had an answer :(
Lesley, I have just started an exercise for my butt cheeks this week, and yesterday I had similar pain. The PT I'm seeing has me doing some stretching exercises as well as strengthening exercises, and it's made a big difference for me. My main issue is tight hamstrings (they may never loosen up), but we're also working on rotator cuff muscles and glutes (butt).
You can see my thread from today discussing my first visit with a special physical therapist who focuses on the pelvic region. I'd NEVER heard about how all those muscles down there can impact so many aspects of health, from organ symptoms to back problems. I answered a very thorough questionnaire about whether I had back or leg pain-I don't-along with bladder and bowel problems. I guess depending on which muscles are too tight or not tight enough or are spasming.....you'd get different symptoms. Something worth looking into! I have had pain in my thigh-to-hip joint (I need to look that up...what's it called?) for a long time, and there are times at night when it aches to badly I can't sleep. I see that someone else in this thread mentioned having to put a pillow between the legs because it hurt the hip/joint too much. Well, the PT today mentioned this muscle that comes from inside the pelvis and wraps around that joint, so that moving the leg around stretches that muscle......and that's exactly what hurts in me! I thought my leg was unrelated to my internal pelvic problems (except to wonder if it was all related to inflammation) but maybe not. I was shocked.
Katiebarstool, are you familiar with Ehlers Danlos Syndrome? In one form, joints are hypermobile. My sister probably has it (she used to do the "party tricks" as a kid-funny then but now her arms are falling out of their sockets; my son is like her). I mentioned this in a thread a while ago, wondering if there was a connection (no pun intended) between SJS and EDS, since they both involve connective tissue.
Wow - interesting connections indeed! I have been told by doctors and PT's my whole life that I should never do yoga because I am already too flexible.....
I find that having good posture and staying strong in my core/lower belly is absolutely critical for my comfort level. I train and ride horses for a living (and a hobby), so that keeps me pretty fit through my core - when I am on vacation for a while or am sick and can't ride, the hip pain returns. I guess my job IS my physical therapy!
I have heard that sitting on one of those exercise balls instead of an office chair if you have a desk job is really good for keeping the pelvic floor and core toned.
Boy did this hit a nerve! I had hip pain for years. My rheumy put me onto Zyflamend caps. It is herbal product. It took a few days to work but work they did!! thinking it was all in my head that they worked I went without them for a week (well I ran out of them and it took that long to get some more) after a few days back on them I was a happy camper.
I have primary sjogrens. I also walk when I am able. I got a Wii fit a few years back. I have come up with my own routine that works for me. I do think that has helped as well. I don't like taking pain meds and with Zyflamend I have not had to take them.
Such good conversation with this thread~ lots of good information~
Quote from: Sleepy In Seattle on January 04, 2013, 02:58:07 PM
I have heard that sitting on one of those exercise balls instead of an office chair if you have a desk job is really good for keeping the pelvic floor and core toned.
I sort of cringed when you mentioned an exercise ball instead of an office chair. I have a friend who does movement therapy professionally - she recommended I try a Sissel cushion (it's an inflated wobbly cushion that you sit on and it forces you to use your core muscles). I used it for several days and that's exactly what caused the rapid flareup of my current severe back issues, very distressing. I realize the ball is stationary and not the same thing, but it reminded me of that unfortunate advice from my friend... :(
I also got rid of my ergonomic kneeling chair/stool as well, and really reviewed my work setup. Some say that you need to arrange your desk so that the things you use most during the day are within reach and within a certain radius. So no reaching across the desk for the phone or stapler if you use them often. Chair, keyboard and monitor height are also really crucial.
I do endorse what you say about posture and core stability. The PT gave me a series of exercises to do, in a specific order. He told me he had a back injury that took 14 months of PT because he didn't have time to do the exercises. I'm still early into therapy/rehab, and I do notice relapse when I don't do enough rounds of exercise. Now I really understand the relationship between exercise and back health, for me.
Good thread!
It so funny how things happen......I logged on in hopes of finding a thread addressing hip and lower back pain. Couldn't believe it was the first one on the forum. I have just developed the hip and back pain over the past 4-5 months. It is so terrible I can hardly get any sleep and have woke myself up on numerous occasions lately, crying in my sleep. I have had x-rays, but no real explanation. I have found very little, if any, relief with the meds I am on.
The pain is constantly there but varies in severity. It is starting to affect me emotionally and really alters my mental state and work performance.
I am so thankful to be able to read everyone's posts regarding this and regret I don't have any words of wisdom to offer.
Friedbain
I have heard of EDS, but I don't think I have it. The hypermobility was only diagnosed in recent years, although I seem to have 'puled muscles' a lot over the years, which is probably related to the laxness.
Regarding the exercize ball, I've recently concluded that using one for core strengthening has had a negative impact on my pelvic floor (which might also be hypermobile).
Kathyx
Oh so many of us have this problem. I've had back and hip pain for a long time. I limp when I stand up from sitting and I have to move carefully. I don't like to take medicine if I don't have to. Somedays, I'm lucky, and I'm almost pain free. I think streching the butt muscle and back muscle is very important. If you can, try to squat, this stretches the back and butt. I strech when ever I can, on the computer, at the dog park etc. I like to stretch on my carpet. A good butt pillow really helps. I have one for the car and one at the computer. I try to eat very well, I'm almost a vegan. I just started in November. I'm hoping to lose 15-20 pounds. Maybe my hip and back pain will be almost gone.
Katyjo & all, stretching helps a lot for me. I've always been very flexible, that part hasn't changed. And Katy, losing weight is a great thing if needed though to share my story: I have been too thin, just right, and overweight...with no relief from back problems. Mine started at 25, which was outrageous for a "healthy" person!! This is why I know Sjogren's was at work nearly all my life. Some people don't need to make the flow chart or want to know, but for me it has been liberating in some ways.
Now I know why my spine has given me problems over the years, the link between 2 wrist/thumb surgeries for DeQuervain's, bouts of abdominal illnesses that sent me to the ER, so much more. Now the hip is acting up in a bad way and luckily I have some explanation. I'm not trying to say blame everything on Sjogren's.
I find Epsom Salts baths to be so soothing, relaxing and pain relieving. I gave up Advil and Aleve and am on prescription Relafen, which works great for joint and muscle pain. It also allowed me to cut out too many pills on Advil/Aleve.
My hip pain comes after a long day of work or after a lot of walking, or during the menstrual cycle. But the hip pain feels like my top inner joints are burning/ON FIRE. Near where the lymph nodes/adrenals/ovaries/other glands/hip flexors are located.
Sometimes in the morning my hips feel stiff and I have to stretch with circular motion to loosen them up. But still, all of the tightness feels like it's located at the front inner sockets. Is this all stemming from a glandular/hormonal issue? Or a typical auto-immune inflammation issue?